Accuracy of administrative claims data for cerebral palsy diagnosis: a retrospective cohort study
Maryam Oskoui1, Pamela Ng1, Marc Dorais1
1Affiliations: Departments of Pediatrics, Neurology and Neurosurgery (Oskoui, Shevell), McGill University; Research Institute of the McGill University Health Centre (Ng), Montréal, Que.; StatSciences Inc. (Dorais), Notre-Dame-de-l'Île-Perrot, Que.; Centre hospitalier universitaire de Sherbrooke (Pigeon), Sherbrooke, Que.; Centre de réadaptation Marie-Enfant (Koclas), Centre hospitalier universitaire Sainte-Justine; Institut de réadaptation Gingras-Lindsay de Montréal (Lamarre), Centre intégré universitaire de santé et de services sociaux du Centre-Est-de-l'Île-de-Montréal, Montréal, Que.; Département de réadaptation and Centre interdisciplinaire de recherche en réadaptation et intégration sociale (Malouin, Richards), Université Laval, Québec, Que.; Department of Epidemiology, Biostatistics and Occupational Health (Joseph), McGill University, Montréal, Que.
Insights
Administrative claims data underestimate cerebral palsy diagnoses in Quebec. Validation is crucial, as these data miss many cases, particularly in certain subgroups.
Area of Science:
- Pediatric Neurology
- Public Health Surveillance
- Biostatistics
Background:
- Cerebral palsy (CP) is a leading cause of childhood physical disability.
- Accurate population-level data are essential for CP surveillance.
- The diagnostic accuracy of administrative claims data for CP in Quebec remains unvalidated.
Purpose of the Study:
- To assess the accuracy of administrative physician claims data for identifying cerebral palsy cases in Quebec.
- To determine the sensitivity, specificity, and predictive values of administrative data for CP diagnosis.
Main Methods:
- Retrospective cohort study linking provincial CP registry data with administrative physician claims.
- Inclusion of children born between 1999-2002 across 6 Quebec health regions.
- Subgroup sensitivity analysis to explore differences in case ascertainment.
Main Results:
- The study identified 301 children with confirmed CP, estimating a prevalence of 1.8 per 1000.
- Administrative claims data showed a sensitivity of 65.5% and specificity of 99.9% for CP diagnosis.
- Higher sensitivity was observed for children in rural areas, born preterm, or with spastic quadriparesis.
Conclusions:
- Administrative claims data do not fully capture the spectrum of cerebral palsy cases.
- A more sensitive case definition is needed for accurate CP surveillance using administrative data.
- Caution is advised when utilizing unvalidated administrative claims data for CP epidemiology.
Background:
Cerebral palsy is the most common cause of childhood physical disability, with multiple associated comorbidities. Administrative claims data provide population-level prevalence estimates for cerebral palsy surveillance; however, their diagnostic accuracy has never been validated in Quebec. This study aimed to assess the accuracy of administrative claims data for the diagnosis of cerebral palsy.
Methods:
We conducted a retrospective cohort study of children with cerebral palsy born between 1999 and 2002 within 6 health administrative regions of Quebec. Provincial cerebral palsy registry data (reference standard) and administrative physician claims were linked. We explored differences between true-positive and false-negative cases using subgroup sensitivity analysis.
Results:
A total of 301 children were identified with confirmed cerebral palsy from the provincial registry, for an estimated prevalence of 1.8 (95% confidence interval [CI] 1.6-2.1) per 1000 children 5 years of age. The sensitivity and specificity of administrative claims data for cerebral palsy were 65.5% (95% CI 59.8%-70.8%) and 99.9% (95% CI 99.9%-99.9%), respectively, yielding a prevalence of 2.0 (95% CI 1.9-2.3) per 1000 children 5 years of age. The positive and negative predictive values were 58.8% (95% CI 53.3%-64.1%) and 99.9% (95% CI 99.9%-99.9%), respectively. The κ value was 0.62 (95% CI 0.57-0.67). Administrative claims data were more sensitive for children from rural regions, born preterm, with spastic quadriparesis and with higher levels of motor impairment.
Interpretation:
Administrative claims data do not capture the full spectrum of children with cerebral palsy. This suggests the need for a more sensitive case definition and caution when using such data without validation.
